Mark Johnson was the primary caregiver and support for his wife, Shirlianne, who was living with dementia. Choosing to move past stigma, they both found hope, energy and comfort in connecting with friends and playing an active role in their community. Here, in his own words, Mark reflects on his experience loving and caring for Shirlianne (Shirl) before she passed away in 2014.

Normally, I am asked to talk about Shirl’s diagnosis and the clinical side of her care. Also, the experience of home care and when Shirl moved into assisted living and the emotions that go with making those decisions.

But there is a big piece to this disease that few people talk about: the importance of community and building a grassroots dementia-friendly community. This is key, because after seeing the doctor for 30 minutes every six months, the other five months, 29 days and 23 hours were spent living in our community.

Asking for Help

When Shirl was first diagnosed, I found both of us withdrawing. We stopped going to things like company barbecues, parties and get-togethers. We were unsure of how to approach the topic of Shirl’s diagnosis. Shirl was worried that people would think she was strange and certainly we had some self imposed stigma about her disease

We would use any excuse to avoid being around people. And if people asked us how we were doing and if we needed help, we would say, “No! We’re fine.”

Saying “Yes”

I had been asked to play soccer with a team and I turned it down because I didn’t feel it was appropriate leaving Shirl for long periods, but I really wanted to play. Then, one day, when I was coming home from work, my next-door neighbour Marilyn asked if she could help. But this time, instead of saying, “No, I am okay,” I said “Yes.” If Marilynn could sit in with Shirl for an hour each Friday evening, I could go and play soccer.

Marilynn, being Marilynn, suggested I stay a bit longer and have a beer with the guys. So, every Friday, I would pick up cakes and make a pot of tea, and Shirl and Marilyn would sit down and watch Say Yes to the Dress. Meanwhile, I would run like crazy chasing a ball and then have a beer. This small thing worked so well and helped me so much. It was an amazing respite. And Shirl and Marilynn enjoyed one another so much that when I came home, Shirl would sometimes say, “Oh, you’re home?” like the fun had come to an end.

When you play soccer, there can be lots of functions to go to, but I was still hesitant to attend. When I explained that we couldn’t go because it could be awkward with Shirl’s diagnosis, my team said, “No!” The team said they would work at making Shirl feel comfortable and would understand what to do to make sure she had a good time. They were clear that, whether Shirl lasted 15 minutes or three hours, it wasn’t an issue.

Widening Support

Two of the guys from my soccer team knew Shirl because she would walk around the area with our little black dog, Ossie. They said they’d keep watch to make sure Shirl and Ossie were okay. That gave me the idea to get photocopies of Shirl and Ossie done, clip my business card to the paper and give it out along Shirl and Ossie’s walking route.

After that, sometimes we would go for a walk together and people would wave and say, “Hi, Shirl.” I would ask, “Do you know these people?” Shirl would say, “No, but they’re nice,” and wave back.

Sharing Support

Our friends from B.C. didn’t shy away from us either, because they knew Shirl well. Every January, we would go to Mexico with them for two weeks and have lots of fun. For us, there was also the benefit of their shared support for Shirl’s care. In the summer, we would also go to their house in B.C. and even took a few trips to California and Vancouver Island. It was the best respite ever! To be around friends and also share in the responsibilities for Shirl made me feel really good.

Finding Perspective

There was plenty of stress and fear that went with this diagnosis, but the people around us, and the Alzheimer Society, helped me and made me more resilient.

I remember a psych nurse coming to the house once and giving Shirl a cognitive test. Afterwards, the nurse said that Shirl had done so badly on the mini mental and Montreal Cognitive Assessment tests that I should look at long-term care. The nurse said it was time.When the nurse left, I called the Alzheimer Society and they suggested that I look at how Shirl was functioning and not the test.

So, I decided we needed a holiday away. I booked four weeks back home in England and two weeks in Mexico.

Living Well

I wanted Shirl to live well with dementia and I believed that could only happen if people around her lived well with her dementia, too, and they did! People around Shirl were patient and understanding and that helped me keep her at home a lot longer, probably 12 to 16 months longer.

When Shirl did go into long-term care, she went downhill really fast and passed away 18 months later. I believe that Shirl went downhill because she lost the things that mattered to her most: Ossie, me, her friends, her community and engagement with that community. And on a personal level, I was no longer resilient — I was broken.

Coming Full Circle

Sometimes, we look for solutions in four-storey care homes and not among the grassroots of our community. Today, I am very lucky to work for the Alzheimer Society of Alberta and Northwest Territories and see the effects of community in my job.

One day, a gentleman named Jim phoned me at the society. He wanted information, as his friend had just been diagnosed and Jim was determined to understand how he could better engage with and support his friend. As I was getting his address to send a package out, I realized he lived on my street. Without prompting him, he told me a story about a young lady on his street who had been diagnosed with Alzheimer’s and her little black dog. Jim said, “I would always wave and say ‘hi’ and tell her what a nice little dog she had.” He said he wished he’d understood more about her experience, as he wanted to be more helpful to her.

Everyone I met on this journey wanted to do the right thing for Shirl, and that’s what I draw strength from. We need to continue to educate our communities and build a positive experience for people to live within them. [ ]